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Joined: Jan 2013
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Such an appropriate topic. I am just 3 weeks post and find there is a large hole where once there were daily treatments, lab tests, and constant contact with medical professionals all having a very clear and common plan and prescribed goals.

One that that all stops, instantly. Then you are there all alone, drifting in the sea, nobody in sight, nobody asking questions, nobody to ask questions of, no contact, no routine, no set defined goal, no sense or progress toward a goal, just adrift.

I am not longing for a return of those crazy times, just stating another transition in this new life of living with cancer. Throughout the entire time, I had another "job" that took a lot of time, energy, and focus to plan and prepare and execute each day. Those hectic days are now past being post treatment.

In a new phase, the need to plot and plan this next leg of the journey begins. One with fewer visits and check in yet filled with far greater significance. Those first few scans are not taken lightly, even me being a stoic for the most part, will not be entirely surprised when the days draw down the that first PET. Is it gone? Is it all clear? Is there anything new or odd?

Meanwhile, planning to return to daily life as it was, although with a radically different view on life and meaning of how any day gets spent, becomes the focus for me now.

Adrift at sea, all alone, but say! Is that land?!


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Yes I remember after I finished Tx saying to myself "what now". Big letdown and of course you couple that with "will my cancer come back?" and it's no wonder we all don't become basket cases.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jun 2011
Posts: 54
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Jun 2011
Posts: 54
Yes, I am in this weird space too. With the 2nd recurrence, I feel like I lost the support of some friends too. Maybe too hard for them. Not sure. As for me, I feel tense and antsy regularly as well. I still want to do stuff but I think I am too self conscious because of my lisp. I'm working through it but its tough for sure. I'm praying that with time, I will adapt to yet another new normal and be more social with friends.


Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
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